The incredible journey of Thatcher Ulysses

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Monthly Archives: October 2014

So I’ve been sitting here trying to figure out how to kick off Down Syndrome Awareness month. I intended to participate in 31for21, which is where you blog every day of October to promote Down Syndrome awareness, but I’m on night shifts and I totally let sleep take prescience last night instead of devoting my time to blogging. So here we are, kicking it off on October 2nd. Oops.

I sat here thinking and browsing other people’s blogs, trying to think of how to start. And then it hit me.

Yes, we need to promote awareness. But WHY? I mean, everyone I know has been really open and welcoming. Since I’ve gone back to work, everyone has been amazing and interested in how Thatcher is doing, and has told me how adorable he is (I agree!). It seems like, in my life, awareness and acceptance are already running rampant.

Except, it’s not like that everywhere. I still read articles on Huffpost or Upworthy about Down Syndrome, and underneath the heartwarming post, there are comments about how kids with Down Syndrome… kids like mine… should have been aborted. About how they are a burden on society. About how they shouldn’t be allowed to live normal lives, be included in “typical” classrooms, or have jobs. And I look at the abortion rate of babies with a prenatal diagnosis (something I plan to cover in a separate blog): 80%. EIGHTY PERCENT. Eight out of ten families who find out that their baby has Down Syndrome, abort them. Just because of one extra chromosome. So, clearly, awareness must be raised. Acceptance isn’t here yet. We are far from it.

But with this blog, I wanted to get into how far we have come, and how proud we should be of our forefathers, who raised amazing kids with DS despite adversity, and helped us to be where we are now. Without them, Thatcher wouldn’t have received the care he has. He wouldn’t have been set up with physiotherapy at two months old. We wouldn’t have our local Down Syndrome Association. Without them, nothing would have changed.

You might wonder what I’m talking about. Maybe some of you are old enough to remember those times. Maybe, like me, the only injustice you recall for kids with DS was that they were in the “special needs” class in school, where they were totally segregated and made to feel like outcasts by us, the “normal” kids. And yeah, that’s pretty bad. But it’s not nearly what I’m talking about. I’m talking 60, 70, 80 years ago. When people with Down Syndrome weren’t even treated as people.

I had a conversation a few weeks ago with a lady at work. The topic of DS has come up a lot at work, because people have a lot of questions about it (which is great, and I appreciate it! The more you know, the better!), and because we have a few patients right now with Down Syndrome. The conversation I had with this woman both sickened me and made me thrilled that we have come so far. She told me that her father, who must be in his 70’s or 80’s, had a soft spot for people with Down Syndrome. The reason being, every day when he walked to school he would see a little girl with DS sitting in her bedroom window. The girl’s siblings went to his school, but the girl never left the house. She had a room upstairs that she wasn’t allowed to leave; the parents would come in and feed her and change her, but that was it. And back in the day? That was NORMAL. Some people with kiddos with DS would ship them off at birth, pretend they never even knew they existed, pretend they died. It was shameful to have a kid with Down Syndrome. It wasn’t acceptable in society. One in 600 live births is a child with Down Syndrome. But somehow it was something to be ashamed of.

I feel for those parents. I wonder, if they are still alive, what they think of how things have changed. Are they glad to see that people like their daughter have normal lives, go to inclusive schools, graduate, go to college, get married? Do they feel sorrow for the life their kids could have had, if things were different? I imagine they must, although I know how hard it must have been for people to go against the grain and fight for education, fight for healthcare, fight for rights. It’s a fight that may not be as obvious today, but it’s still being fought. It’s being fought because of the abortion rate. It’s being fought because of the trolls on the internet who think that my child doesn’t deserve to be here, to have an education, to have a job, to have a normal life. And it’s a fight that I will continue to fight, not just this month, but every day, because I never want to be the parent that looks back in sixty years and thinks, “I should have done more.” My child will never be locked in a proverbial room. He will be running around that neighbourhood with his brothers and sisters, walking home with that neighbour boy, who will still, when he grows up, have a soft spot for people with Down Syndrome. But the soft spot will be because he knows and loves Thatcher, not because he never had the chance.